You may have noticed the high concentration of Alzheimer’s disease and dementia-related topics in the news so far in 2024. From new research that indicates earlier detection of dementia is on the horizon to breakthroughs in medications that promise more targeted treatment through the stages, the news has been filled with signs of progress towards potential relief for the millions diagnosed with dementia and their loving, dedicated caregivers.
Dementia Caregivers are in Good Company
One thing we have learned about dementia is that it is a disease that does not discriminate. While the prevalence of certain dementias appear to be higher among specific populations and demographics, it is true that nobody is immune. When we hear about celebrities like Beach Boys legend Brian Wilson and talk show host Wendy Williams facing diagnoses of their own, or when the family members of Bruce Willis speak out about taking on the challenges of caregiving, we are reminded that memory impairment can affect anyone, regardless of background or status.
The truth is that dementia caregivers are indeed in good company. The latest statistics from the Rosalyn Carter Institute for Caregivers says that “53 million Americans serve as caregivers to someone who is aging, ill, or living with a disability.” Estimates from the Alzheimer’s Association put the percentage of those specifically caring for loved ones living with dementia at 27% or over 11 million.
As one of those 11 million dementia caregivers, you may feel comforted to hear about celebrities facing similar challenges and perhaps, even more connected to a larger community of support. Additionally, these public figures and their families often use their platforms to advocate for better resources for those people living with dementia and their families. You are truly not alone.
Caregivers Need Care Too
Matt Mann is an Alzheimer’s disease advocate who helped support his father after his 2008 diagnosis. “It’s a labor of love, but it can be draining,” Mann said about family caregiving during a recent caregiving conversation on the WXXI News program Connections in Rochester, New York.” He described how his mother served as the primary caregiver for his father, with the rest of the family—specifically he and his siblings—providing support.
Mann stressed that it is important to remember that “caregivers need to take care of themselves” as they prioritize the care of their loved one. “Regularly check in with professionals and see where you are and see if the person’s needs are greater than what a caregiver can provide. Get the right support,” said Mann.
As a caregiver, remember that taking care of your own needs is essential. Seek support, connect with other caregivers, and prioritize your well-being.
Avoid a Crisis: Know Your Options
As director of caregiver services at Lifespan of Greater Rochester, Katy Allen joined Mann and St. John’s Dementia Specialist Mimi DeVinney on Connections and spoke about a typical scenario that her colleagues see when people reach out for help. “(Often) it is when things have come to crisis,” Allen described, noting that it is common for overwhelmed caregivers to wait too long to seek guidance. Unfortunately, hesitation to reach out can lead to missing out on services and supports when they are most needed.
“Take those moments early on, shortly after a diagnosis or when you have moments to breath,” Allen suggests. “Connect with professionals in your community at that time just to start getting education and options.” Even if you never end up needing to access many or even most of the options you discover, it is important to at least have an understanding of what resources are available and how you can access them. In the early stages of your loved ones’ disease, Allen said the goal is “to be as educated of a caregiver as possible.”
Let Us All Change the Way We Talk About Dementia
When it comes to caring for a person or persons living with dementia words do matter. McKnight’s Long-Term Care just today posted an article on language and dementia care and our St. John’s expert Mimi DeVinney wrote her own column on the topic for McKnight’s in 2020. Both pieces discuss how the words we use and the perpetuation stereotypes and stigmas can have a harmful effect on the way the disease is treated.
As DeVinney said, “changing the way we talk about people living with dementia is an important step towards honoring them as individuals.” Whether you are a caregiver for a loved one with dementia, a professional working with a patient or client with dementia, or an advocate supporting people living with the disease, you do have influence to change the conversation around dementia. Now that Alzheimer’s disease and dementia are becoming more newsworthy as the scope and impact of the disease continues to grow, ensure that the words you use to describe your experience are just as impactful.
